Why Psoriatic Arthritis Patients Need More Than A Diagnosis
I was diagnosed with psoriatic arthritis two years after my psoriasis diagnosis. When I look back, I am certain my healthcare team could have detected both at the same time. I only received a diagnosis and prescription for my psoriasis.
A discussion around progression, a pamphlet, website, or any form of reference would have been helpful.
Some might argue that it is the patient’s responsibility to research their diagnosis. I don’t totally disagree with that. We should definitely research and dig up as much information as possible on our own. However, finding that information isn’t always easy.
Here are a couple of examples of how receiving a full explanation and list of symptoms, beyond what led to my diagnosis could have improved my life with psoriatic disease.
Psoriasis and everything that's related
A full list, beyond the rash that led to my diagnosis of psoriasis, would have made an enormous difference in my life. It would have helped me have a better understanding of what psoriatic disease was. Most importantly, it would have opened my eyes to some of the strange symptoms I had been experiencing in the years prior to my diagnosis.
One of the reasons I waited to see a doctor about the possibility of arthritis was that my symptoms didn't make any sense. I waited as long as I did to address what I would later learn were symptoms of psoriatic arthritis.
Had I been asked about or given information about psoriasis and its connection to psoriatic arthritis - my fatigue, lower back, and foot pain would have stood out. Instead, I blamed turning 30, being busy, and wearing the wrong shoes for something serious.
Receiving my psoriatic arthritis diagnosis was not much different. Although it was my rheumatologist who noticed my toenails during an appointment for fibromyalgia, he only brought up a few other symptoms. But they were not enough to fully understand my diagnosis.
There are so many symptoms that are either misunderstood or not talked about often. Enthesitis is one that I had only learned of five years ago, even though I began experiencing it long before my diagnosis. It wasn’t until the last eye exam that I learned my diagnosis put me at risk for developing cataracts sooner than the average person.
Receiving a comprehensive list of psoriatic disease symptoms at the time of diagnosis would have also made it easier to explain to family and friends. Psoriatic arthritis is one of my most frustrating illnesses to explain. Everyone assumes that it is simply arthritis.
The power of education
Maybe it is just me, but I feel that if doctors were to educate their patients with information beyond their diagnosis, beyond what we came to see them for, they might discover that some of the symptoms that seem uncommon may be more common than they realize.
Not to mention that when patients know what to be on the lookout for, they may seek and receive care before the symptom spirals out of control or has time to create major damage.
What are your thoughts? How well did your diagnosing physician explain psoriatic arthritis?
Were you ever misdiagnosed before being diagnosed with psoriatic arthritis (PsA)?